Secondary Infection

[chuck barton]

Although the time I spend on the website is erratic, I do not remember a lot of threads regarding secondary infection. So I would appreciate hearing from anyone who has had similar experiences.
I had my native aortic valve replaced in November 2011, with a Sorin Bovine pericardial valve. By the first week in October 2012, everything seemed to be progressing perfectly. I was doing weightlifting workouts at the gym, almost to the level prior to the AVR. I had hoped to be jogging or running better, although I did a few miles on the treadmill every other day at a 4.0 mph pace and was using an elliptical to try to get back to a jogging pace.
In the first week of Oct. I woke up one morning and made some coffee but shivered a little even though the room temperature was 83o. I asked my wife to finish breakfast so I could go back to bed for a few minutes. Within 10 minutes I was shivering convulsively and my temperature was about 105 o. We called the ER and I was taken to the hospital.
The diagnosis was a Strep Group B blood infection. On rocephin the blood cultures were negative within a couple of days. I had a couple of cardiologists tell me that they would replace the aortic valve without question. My own cardiologist did two echo’s and a TEE and there was no evidence of infection on the valve. I am currently on an 8 week intravenous course of rocephin, and after that I will probably be on an oral course of cephalexin for about a year.
Although there was no evidence of endocarditis, it is being treated as if I had endocarditis. One of the final downers in the episode is that they played the final installment (Less Than Kind), of one of my favorite actors, Maury Chaykin, about 10 years my junior, who died of a heart valve infection a couple of years ago.
If anyone has had similar experiences with infections, advice on future precautions, I would be interested in reading about it

 

[Luana]

So you did not have the valve replaced?

I had subacute bacterial endocarditis years ago, with my native valve, though I had damaged valve(s) from rheumatic fever as a kid. Though I was warned of the danger of endocarditis, I was mis- or underdiagnosed several times, three months actually, before I finally got treatment. Luckily, I did not need VR then, but did 3 years ago.

Endocarditis is nothing to mess with. Before the days of antibiotcs it was a death sentence. I'm well familiar with what to watch out for, and hope everyone with a murmur who who's had VR knows to be very cautious about it.

All the best to you for your recovery.

 

[chuck barton]

Luana
Thanks for the reply.
At the moment I still have the pericardial aortic valve which was replaced about 10 months ago. Since there has been no indication of any of the echo's that the valve was infected, they are continuing with the antibiotics as if it were infected but monitoring the valve by imaging. My next echo, or possibly TEE will be after I finish the intravenous antibiotics and start the oral Cephalexin.
Initially I was somewhat cavalier about the whole thing, since the blood cultures were negative within a couple of days, I was expecting to be back in the gym within a week. Some of the doctors seemed to be treating it with a bit of overkill. Then as I found out more about septicemia and read more about endocarditis it was apparent that this is a much bigger issue than it first seemed. Also since there seemed to be a dearth of postings on this website about secondary infection, it appeared to possibly be somewhat rare.
At the moment I am still trying to get a better understanding about the route to recovery.

 

[Forrest]

Sorry to hear of the blood infection and that you have to be on antibiotics for a long time. But if I understand your post correctly, the doctor said the infection apparently hasn’t manifested itself as Endocarditis and that you have no vegetations on any of your valves, that’s a relief to hear as I’m sure you have gone through a lot while awaiting test results. I can understand why they are treating it seriously, and as if it was Endocarditis, to make sure the bactermia is completely out of your system. I know it must be trying to have to be treated for such a long period including oral antibiotics, but hang in there, I imagine they are using the best protocol and most appropriate antibiotics to rid you of any risk. I’m no expert here and there’s not much else I can say about this subject, it’s rather technical stuff, and probably depends on a lot of details about how to treat different scenarios that I wouldn’t want to take a guess at. I can imagine they are playing it very safe with you, so you can eventually put this all completely behind you.

I had contracted Endocarditis less than two months after first hearing of my diagnosis of congenital aortic valve disease. After being diagnosed with an aortic valve defect I quickly studied up on what Endocarditis could mean to me, thought I’d never get it but still wanted to understand it the best I could just to play it safe. I knew it was very rare among the general public, but a relatively larger risk for us heart valve patients (but still basically a low occurrence). Fortunately I detected my symptoms promptly and got into urgent care. I told them about my congenital valve and that I recently had an invasive dental procedure performed, they discovered that my white blood cell counts and other pertinent markers were way out of whack, I was hospitalized for a few days and put under a barrage of different antibiotics until the cultures were fully grown and they identified the exact culprit (strep viridans), then they inserted a PIC line into my bicep that traveled to my heart and dangled into my atrium, where daily I would self infuse Ceftriaxone for another month at home. In the end I was very lucky, as I hear some folks had their valves seriously damaged by vegetations. After the infusion therapy was completed my cardiologist and I decided it was time to get my very narrow native valve replaced. It took me a while to say to myself, “just because I got hit by lightening once doesn’t mean I will again”. Actually my chances of a repeat are greater than getting hit by lightening, but still unlikely. I had subacute bacterial endocarditis, very dangerous. But it's noteworthy to understand that "acute" endocarditis can move even more rapidly and can be very insidious.

Now that I have a prosthetic valve I know contracting Prosthetic Valve Endocarditis (PVE) would not be good, but I tell myself that risk of Endocarditis should still be a low occurrence. But because of the serious nature of this type of infection and that I contracted it once, I need to be aware of it. I basically understand the symptoms so I would have a good chance to get in promptly, and they are better capable of treating it now days. As a precaution, I’m well versed on the symptoms, I try to maintain a healthy immune system (not that this would prevent it, but it couldn’t hurt), I inform healthcare practitioners that I have a prosthetic valve, I have regular dental visits, and of course I know to take pre-meds before any of the standard procedures that require them. Other than that it seems much of the risk of contracting it is a matter of the luck/un-luck of the draw. I don’t worry about it like I once did, but as heart valve patients we can never take this subject lightly. By discovering your infection while in your blood but before Endocarditis could develop or any vegetations tried to set up camp on a valve is good (I know it must not feel that way to you right now). Sounds like they are doing what the science tells them is the best safeguard to protect you, and I imagine you are well protected while under antibiotic cover. I hope your cardiologist and infectious disease doc are keeping you well informed. It sounds like you’ve already gotten the upper hand on this, and once the full treatment is completed I hope you feel very confident it’s all safe and clear. Best wishes.

 

[Jkm7]

I'm very sorry to hear of these infections and hope the treatments are successful.

Would some of you who are well versed in the symptoms please share with us what symptoms to be on alert for?
I have a bovine valve and faithfully use antibiotic cover before every dental appointment but should they fail me, I'm not sure, aside from fever, what symptoms to be alert to.

Thanks if you can help.

 

[Forrest]

Jkm7,

Since becoming a heart patient I’ve looked at several lists of endocarditis symptoms, they differ slightly but all state that Fever is the main symptom. I am no expert on the symptoms at all, so please research further at credible websites (e.g., Cleveland Clinic and American Heart Association, etc.). Like many medical matters, the symptoms can overlap with common less dangerous ailments and that can make it more difficult for us to ascertain and vulnerable to being misdiagnosed, especially if you and your doctor aren’t aware you have an underlying heart valve condition. But since we already know of our heart disease the doctors should (emphasis on “should”) know to rule out endocarditis before dissmissing any classic symptoms. A specific blood culture is often performed to identify any endocarditis causing bactermia.

Symptoms of endocarditis either develop slowly (subacute) or suddenly (acute). I had subacute bacterial endocarditis a few months before I had my native aortic valve replaced. For me, I only showed about 4 of the several symptoms I had researched, the thing that stood out for me was I recently had an invasive dental procedure performed so thought I’d just watch things a bit closer in case of the very odd chance I’d get it (I guess I had to be the one to complete the statistics). I observed two main symptoms, intermittent fevers and on day 10 I awoke with the biggest abdominal cramps of my life, could barely stand up. I am otherwise a very healthy physically active person, so to feel this way in the middle of summer was odd. I was trying to dismiss the event as I was just imagining things after reading about it so much. I dismissed my sore throat as my hay fever or a small virus, one night of chills was dismissed, and I was even trying to dismiss my fever since they were mild (usually 101) and they’d go away for a day then come back, the night before I brought myself in to urgent care I got a fever of 103. Apparently, subacute endocarditis can present with mild fevers, whereas acute endocarditis is usually higher fevers. I was told that I detected my endocarditis much sooner than is normal which may have helped me prevent vegetations, however the treating cardiologist said don’t take this as typical, if I ever get acute endocarditis he said things can move very fast, including vegetations starting to form at about the same time as symptoms.

I believe that Prosthetic Valve Endocarditis (PVE) is still of relatively low occurrence, but can be very dangerous to valve patients since the colonies of vegetations can attack the sewing ring/cuff area of either valve type (I’ve read that the incidence between tissue and mechanical valves are about the same). But don’t take all of this as a reason to be fearful or paranoid, I believe it’s still a relatively low occurrence, they have gotten better at treating it, but just be careful knowing that as valve patients we need to be aware of the risks and dangers of endocarditis and take it seriously and get in quickly if you have an unexplained fever or hunch. The list below is not exhaustive at all, I’ve combined a few of them from various articles, and again I am no expert at this stuff so if you’re interested do some personal research or speak to your cardiologist (I don’t claim to know all the ins and outs of this technical subject, and could have made incorrect assumptions). My discussion above relates to “bacterial” endocarditis, I believe there are some less occurring variants, and how symptoms progress with an individual can certainly vary.

Symptoms:

• Fever is the classic symptom and may persist for days before any other symptoms appear. See the following other symptoms.
• Abnormal urine color
• Blood in the urine
• Chills
• Excessive sweating
• Fatigue
• Joint pain
• Muscle aches and pains
• Nail abnormalities (splinter hemorrhages under the nails)
• Night sweats (may be severe)
• Paleness
• Red, painless skin spots on the palms and soles (Janeway lesions)
• Red, painful nodes (Osler's nodes) in the pads of the fingers and toes
• Shortness of breath with activity
• Swelling of feet, legs, abdomen
• Weakness
• Weight loss
• Sore throat, scratchy throat or pain when swallowing
• Nausea, vomiting or diarrhea

 

[Jkm7]

Many, many thanks, Forrest.
What a helpful, very informative post.
It is greatly appreciated .

 

[newmitral]

Forrest has already given an excellent reply, and has given the classic symptoms of bacterial endocarditis.
Nevertheless, I do want to add a few others from my own personal experience with bacterial endocarditis, which had symptoms not included on his list.

I had no prior heart problems, but now have a mechanical mitral valve as a result, rather than a precursor, of endocarditis. Because my symptoms were a bit atypical for endocarditis, and endocarditis is fairly rare to begin with, it took quite a long time to diagnose. Hopefully, by listing these symptoms in addition to the ones Forrest has given, someone googling these symptoms sometime in the future may get a hint to check for endocarditis.

My first symptom was a persistent, dry cough that lasted several weeks before any other symptoms showed.
I never developed a fever, but drenching night sweats set in a few weeks after the cough.
The night sweats, combined with the cough, prompted me to see a doctor, who found my spleen to be significantly enlarged. Blood work showed that I was severely anemic.
Further blood tests showed markers for infection - an extremely elevated C-Reactive Protein reading.
The chills and weight-loss/loss-of-appetite did not happen until a few weeks later (while the doctors were still running many other tests).
In the final stages, I did also develop the splinter hemorrhages under the nails, and the Janeway lesions & Osler's nodes on a few fingers, but by the time these showed my heart valve was already toast.
Oh, and the endocarditis, with the consequent vegetation, also caused a heart murmur that was among the worst many of the med students at Johns Hopkins had ever encountered.

So, even without the fever, a persistent dry cough could be an early tip-off to check for endocarditis.
I would add to Forrest's list:

• Dry, persistent cough
• enlarged spleen
• anemia
• elevated C-reactive protein level
• heart murmur (new or worsening)

One more bit of information that might help someone later, my spleen did indeed return to normal size within a few months after I had the valve replaced and the IV-antibiotics killed off the bacteria. I could not find anything on the internet when I looked to try to check whether this was an irreversable consequence of the endocarditis or not. Fortunately, it seems that the spleen, in my case at least, did recover once the infection was cleared.

Having had it once, the literature say, puts one at higher risk of getting it again. Although I still have no idea where I contracted it the first time (I had no dental work done), I am now also taking antibiotics prior to any dental visits, even cleanings.

I believe the current AHA guidelines are:

Patients eligible for antibiotic prophylaxis prior to dental or other high-risk procedures include those with a prosthetic heart valve, previous infective endocarditis, and cardiac transplantation with subsequent valvulopathy, and patients with some forms of congenital heart disease

 

[chuck barton]

One thing I wanted to add to this thread was that I had never had any dental procedure prior to developing the infection. Without exception, the first question that any doctor asked in the hospital, was "did you have a dental procedure"?. My cardiologist had made it very clear nearly a year ago to take amoxycillin prior to any dental procedure and gave me a prescription, without limiting refills for the antibiotic. The only possible cause of the infection that I have been able to consider as possible, is that about a week prior to getting sick, I got a minor abrasion while refilling the swimming pool chlorine. It tore a small piece of skin off and i poured alchohol on it immediately. I have had hundreds of far more serious abrasions, and did not treat this one on a daily basis or put any antibiotic dressing on it. In the future I will be treating even minor cuts and scrapes far more seriously.

 

[Forrest]

Hi Newmitral,

Your post highlights that there could be different variations of endocarditis symptoms, and that although fever is almost always present it’s apparently not a given. One of the reasons I hesitated when I first got symptoms was because I didn’t think the fevers could be so mild and intermittent, but under my subacute endocarditis they were. But once I got the enormous abdominal cramp (that only lasted one morning) and then a higher fever replaced my mild intermittent fevers I was convinced that something was very wrong.

Sorry to hear that your case led to severe damage requiring replacement of your native valve. After becoming a heart patient I became friends with a person whose endocarditis was mis-diagnosed several times over months during the 1980’s, he didn’t know he was bicuspid and at the end his valve was ravaged by vegetations and even the wall of his heart needed repair, they finally caught it because he passed out or had a small stroke (he was lucky to survive, and he’s now doing very well). I was told that I was an unusual case in that I got in so quickly that although my heart lining was inflamed and all my markers were way out of whack and strep viridans were all through my blood, I hadn’t yet developed vegetations. I guess this was an exception and very fortunate for me. It’s good that Chuck got in before his strep group-B blood infection could develop into full blown endocarditis; now that he’s being treated with strong antibiotic infusion therapy and then a long course of oral antibiotics I imagine he’s going to be very safe, it’s reassuring that he’s under care of doctors very experienced in treating his situation.

Thanks for adding the extra symptoms to the list. I believe Bacterial Endocarditis can come from a variety of sources, for example, oral flora/dental, intestinal tract, genitourinary tract, or possibly from the outside. Even a case of strep throat that is allowed to go untreated could eventually put a valve patient indirectly at risk (make more susceptible) where endocarditis causing bacteria could possibly reach or infect the heart. Fortunately, the incidence of endocarditis is low, but a topic of more concern to us valve patients. I understand that since I got it once the AHA considers that I’m at somewhat of an increased chance of getting it again. I asked my treating inpatient cardiologist if it’s true and if so to what extent, he said yes it’s true but they don’t really have any concrete statistics on how much additional risk I would be at, and he said I should know the symptoms and treat the subject seriously. My inpatient infectious disease doctor said it’s not a forgone conclusion that I will ever get it again, he seemed to say that he didn’t think I would be at a significantly higher chance of getting it again, so enjoy life. My own cardiologist seemed to down play my question, saying it’s still a relatively low risk, but I should maintain good overall health including dental, and he said really it either happens or doesn’t (weird answer, but probably true). My own thoughts, I take prudent precautions (am even careful about cuts and scrapes like Chuck says), and I'm well versed on the symptoms, but other than that I’m not going to be paranoid about it .

 

[ski girl]

Hi all-

I had an AVR in October 2011 and in late August 2012 I ran a 12km race - felt like absolute crap! Came home, had a nap, woke up with a fever of 39C. I self-diagnosed using Dr Google as a case of the flu and suffered through it for another couple days. On the Tuesday I started shivering so violently that I had to put something in my mouth to avoid cracking my teeth! That night at about 3am I awoke with pain shooting down my arm so I took myself to my GP the next morning to get something for my 'flu'.

She was right on top of it and rang my cardiologist who told me to get into hospital right-quick. The next symptom to develop was excruciating pain around the area of my gall bladder, not even morphine would do much for it. Blood cultures came back positive for a normal mouth bacteria so they hit me with masses of IV antibiotics, and on the Friday they did a TEE.

When I woke up my friends and my cardiologist were all in tears - it was endocarditis and the valve would have to be replaced, assuming I lived long enough. The valve was covered in 7mm of bacteria (my surgeon later told me it was the most exuberant bacterial infection he had ever seen), and the coronary artery was blocked by 60%. The pain in my gall bladder? Most likely a vegetation that had broken off and got lodged in my abdomen.

On the Sunday morning, one week after my 12km run, I was having emergency OHS to replace my 11 month old bovine valve.

I obviously lived - but if I hadn't managed to drag myself to my GP THREE DAYS AFTER the start of my fever, I probably wouldn't have made it much longer. So my two cents - watch out for sudden fevers that don't come with other symptoms of illness like scratchy throat, etc.!!

And what I've learned - oral hygiene is very important. I was told (after the endocarditis, thanks guys) that people with artificial heart valves should rinse with antiseptic mouthwash, wait a few minutes, then brush and floss.

I hope that no-one else has to go through what I went through - it's very scary being wheeled into the OR not knowing if you will wake up again.

 

[Forrest]

Ski girl,

That’s an amazing story. Sorry to hear you had to go through so much, and right when you were well into your first year of recovery and running. A second operation due to bacterial endocarditis (BE) underscores how dangerous this infection can be. You are definitely a strong person and a survivor! It’s odd that the potential mortality rate of BE, I believe, is actually higher than that of the average valve replacement operation itself. I guess this also tells me how good they’ve gotten at valve replacement surgery, but mostly it highlights the seriousness of endocarditis. I hope you are feeling better and will soon be back to your active lifestyle.

My BE experience was bad enough, but no where near yours. I was an unusual case in that vegetations hadn’t taken hold of my stenotic native valve at the time I was hospitalized, but the doctor said they were soon going to if I hadn’t started treatment. I’m no expert here, but the way symptoms progress seem to vary (with “acute” endocarditis being even more aggressive), yet one thing is certain, if not treated the consequences are always dire.

I use to tell my gal the worse part of me getting endocarditis a few months before I went in for AVR was that it added an extra element of worry during my operation and recovery. I knew it was still of low occurrence, but once you get something bizarre as BE you become much more conscious of it. Time has helped me to overcome the mental aspect of it, and being knowledgeable about the causes, precautions and symptoms has helped me keep a positive attitude as I move forward. I stay well informed about endocarditis but at the same time I don’t over research it on the internet because for me that can lead to information-overload, false assumptions or worry. I can imagine that for some of us with a prior history of BE it can be hard not to think about it all the time, however it’s not a forgone conclusion that I’ll ever get it again. But its risk does come with the terrain, and I try to keep it in perspective as I continue to enjoy my second chance at living and having fun along the way. Best wishes to you and other valve patients who’ve had experiences with heart infections.

 

[ski girl]

Thanks Forrest! Indeed BE is much more likely to kill you than the AVR surgery - one of my friends was told I had only a 30% chance of making it through the surgery. I often wonder how things would have been different if I had managed to get my sick body off the couch and to the doctor earlier, but it never occurred to me that I could have anything other than a cold or the flu.

Now I am very vigilant for fevers, but apart from that I work on the assumption that lightning has struck me once and now I move too fast to be hit again Being paranoid won't help so I think all we can do is just be aware of what symptoms to look for and act on them.

 

[Forrest]

Ski girl,

I’m glad you beat the odds! PVE is very dangerous. Your story is a good reminder for valve patients to understand the various symptoms, and especially fevers. You have such a strong and positive approach. Don’t be hard on yourself, it’s easy to miss the symptoms (even doctors miss it on occasion), and even if you had gotten in sooner it's possible you had a more aggressive case of endocarditis with vegetations setting up faster.

I keep a good working thermometer so I can take my temp when I think I have a cold or something, to make sure I’m vigilant about discerning what’s going on. Of course once you’ve had BE it’s even more important to error on safety, and especially for you during your recovery period. Unless you have been instructed otherwise or have dietary restrictions, it’s good to eat plenty of nutritious foods, even getting just plain old calories, and including a good amount of protein, as I believe this can help your recently disturbed heart tissue to heal faster and smooth over, especially in the first 3 months post-op. And personally, I get my flu shot every year to reduce the chance of burdening my immune system with catching the flu.

You’ll get all of this behind you, not letting your new knowledge of BE take away anything from living with self-confidence and having fun at the same time .